Sickle Cell Disease as a Lens for Health Policy and Equity
Melissa Creary
Assistant Professor of Health Management and Policy
After working at the CDC, Melissa Creary joined the faculty at the University of Michigan School of Public Health in 2016, where she focuses on global health, social movements, race, culture, citizenship, and sickle cell disease.
We spoke with Melissa to learn more about how her research tells a story about equity and health policy.
What is at the heart of your research?
My work focuses on the ideas of health policy and policy development as it relates to social movements, citizenship, justice and how these all work together. Most of my work uses sickle cell disease as a lens to tell a broader story about policy development and attempts to achieve equity. Much of this data has been collected in Brazil, but I’m also doing work here in the United States.
I've always been very interested in sickle cell disease. Before joining the faculty at the University of Michigan, I worked at the Centers for Disease Control and Prevention for almost a decade as a health scientist in the division of blood disorders.
While there, I helped create the national program to collect information for sickle cell disease and thalassemia. This program garnered the attention from the National Institute of Health and we received 20 million dollars to develop a surveillance system. This work put me in the mindset to think about how policy is developed, research gets prioritized, and the ways that we involve—or don't—involve communities in research.
You coined the concept of biocultural citizenship. What is it?
The framework of biocultural citizenship speaks to a deep entanglement of biology, culture, race, and citizenship. More specifically, biocultural citizenship looks at how biology intersects with the cultural parts of identity and how it influences notions of citizenship, both from an individual level but also from the governmental level, such as those who are developing policy.
Biocultural citizenship looks at how biology intersects with the cultural parts of identity and how it influences notions of citizenship.
It’s not the traditional way we think about citizenship—it’s not about immigration status or if you were born in a particular country or place. In a Brazilian context, biocultural citizenship is centered on the idea that a biological and cultural understanding about a body with certain diseases gives you certain rights as a citizen.
In Brazil, you have a constitutional right to health. That gives its citizens some power in voicing their displeasure when they feel those rights to health are not being met. For example, individuals living with sickle cell disease made an argument to the Brazilian government that their needs were not being met for a proper quality of life. Further, they argued that it wasn’t enough to just be a Brazilian citizen, but that their status as someone living with a “black” disease—with direct connection to the African continent should be accounted for. The government responded to these claims and set forth a number of measures to do a better job at care and treatment for their health.
How does your research in Brazil inform your work here in the US?
Currently I’m working on a proof-of-concept project to see how biocultural citizenship might play out here in the United States. The United States has different confines than Brazil—the makeup is different, politics are different. We don't have any constitutional rights toward health. I want to see if there are ways for me to figure out how biocultural citizenship works in the health care system here in the US and how it relates to trust. While both countries are different, sickle cell disease as a commonality to help explain how one might feel like a disenfranchised citizen.
Because there aren't exactly claims that are being made to the government in the US in the same way as Brazil, I'm trying to figure out what kind of other claims can be made for individuals in terms of care and how those claims are mediated by notions of trust. I’m interested in the ways that the larger political atmosphere—in terms of how we felt “cared for” by the government—might translate to care by healthcare institutions. Will the trust we have in our government translate to the trust we have in our healthcare system?
There has been extensive research about health care systems and trust, particularly when it comes to communities of color. My research goes beyond questioning trust from within the walls of where healthcare takes place and expands the responsibility into the political realm. I think it's important to make sure that we're able to talk about these things and collect data about trust beyond the healthcare system, especially now in the time of COVID-19. This will be especially important as we see how COVID-19 plays out in black and brown communities. Will they hold the government responsible for illness and death? As Governors make decisions to re-open their states, will there be an eventual argument for a response to the inevitable spread of the disease? The current pandemic certainly makes my research question a different and interesting one.
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